Tuesday, 24 October 2017

Scoliosis & Me

As I stood in my bikini at 13 years old examining my reflection in the mirror, I had no idea that what I saw was anything to be concerned about. Nor did I realise at 14 years old, when the doctor looked at my body and said “scoliosis”. I had no idea that, at 21 years old, I'd have a letter on my fridge reading: “31st October, 2017: Spinal fusion surgery”. But now, here I am, counting down the days until my spine becomes part-bone, part-metal.

What is scoliosis?

For
those of you who might not have heard of it, scoliosis (pronounced sko-lee-o-sis) is a medical condition “where the
spine twists and curves to the side”.

I have
one curve in my upper spine, and another in my lower spine, so my spine is actually
an ‘S’ shape. (I'm hoping to get my hands on my X-Ray next time I'm in hospital,
but until then, here are some I pinched from Google to give you an idea of what I
mean!)

Scoliosis isn't always necessarily a ‘bad’ condition, and it's
*definitely* not one that often requires surgery (so don't let a diagnosis cause instant panic!). It can cause pain, difficulties and more serious problems (for some people, it can crush bones, organs and lungs), but it's different for every person. It often depends on certain factors, like how big the curve is, and where in the spine it is.

Some quick facts:

·Scoliosis
affects 2-3% of the population
(that’s 1.6 million people in the UK)

·Less than1% of the population will develop
scoliosis that requires treatment

·Less than0.1% will require surgery

·Scoliosis is
most commonly diagnosed for the first time in children aged 10-15

·20% of people
with relatives who have scoliosis also develop the condition

·80% of all
scoliosis cases have an unknown cause

·Scoliosis is more common amongst girls than boys

There are a few different types of scoliosis.
It can be something that you’re born with, something that develops in old age, or
something that’s caused by a separate nerve or muscle condition – but I have
the most common type, known as Adolescent Idiopathic Scoliosis.

‘Adolescent’
means that the curves seemed to develop when I hit puberty, and ‘Idiopathic’
means that there's no known cause or explanation for why this happened.

Diagnosis

I'm
not really sure exactly when my scoliosis started developing, but I was
diagnosed at age 14. I had been experiencing back pain,
but this wasn’t the reason that prompted us to go to the doctor. What triggered
the doctor’s visit was spotting that I had two noticeably uneven hips.

My
family and I were on holidays in Portugal, and I’d packed a couple of bikinis
for the pool. When I was stood in the mirror one day, I noticed how
asymmetrical my hips were.

I
didn’t think anything of it – I just found it quite amusing, and assumed that they’d
probably even out as my body developed. But, when I pointed it out to my mum,
she wasn’t so sure.

When
we went to the doctor, I was asked to
bend over and try and touch my toes – not because she was testing to see whether
I could reach them or not (thank god, because I definitely can't!), but
because this allowed her to examine my back. This is known as the “Adam’s Forward Bend Test”, where doctors will
check for signs of scoliosis such as:

·One shoulder or shoulder blade
appearing higher than the other

·Rib cage appearing higher on one
side

·One hip appearing higher or more
prominent than the other

·The waist appearing uneven

·The body tilting to one side

·One leg appearing shorter than
the other

This isn’t always a fool-proof
method of spotting scoliosis – some people’s backs may
look okay when they actually aren’t – but it might be something worth trying
out at home if you suspect that you or your child may have it. Just make sure you go to a doctor if you think that something is wrong!

The
doctor confirmed that I had scoliosis (which meant absolutely nothing to me at
the time), and then referred me to the
hospital for some back X-Rays. It wasn’t until I was shown my X-Rays that I started to get an idea of what was going on with my spine (and finally
understood why I experienced so much back pain!).

From
a spinal X-Ray, every scoliosis patient
should be given a measurement of the size of their curve, which gets measured
in degrees. If I'm remembering right, I think I was given a measurement of a 12 degree curve in my upper back, and a 21
degree curve in my lower back.Anyone
with a curve above 10 degrees is considered to have scoliosis, but curves under 20 degrees are considered
mild.

At
first, I was just told that I would be
called into hospital every 6 months for more X-Rays to monitor my scoliosis.
(This is particularly important when you’re still growing, because the likelihood is that, as you grow, the
size of your curve will, too.) I was also referred to a physiotherapist to
try and help with my back pain, but eventually, stubborn, impatient, lazy
teenage-me got bored of the whole thing and gave up on it.

***

Things
changed when I turned 15. I went back to the hospital for my usual X-Rays, and
then to discuss them with my doctor. But she looked concerned. “Your spine has
progressed a lot since last time,” she said. “You’ll have to be fitted with a
brace.”

Treatment: Back brace

The hospital referred me to an
Orthopaedic Centre so I could get more specialist care for
my scoliosis; and, while I waited to be called in, I had a cast of my back taken at the hospital so I could be fitted
for my back brace.

A
back brace is most typically used to treat scoliosis patients
who are still growing. It can’t be used to reduce their curve(s), but the hope is that it might prevent the
scoliosis from getting worse as the patient grows.

The
brace is custom-fit to their body and is made out of a hard plastic. The idea
is that it will put pressure on the
parts of the spine that are curving, to try and limit or stop its progression.
I was told that I would have to wear my brace all day, but could take it off to
sleep.

I was allowed to choose the colour of the straps for my brace, and apparently 15-year-old me thought a mix of pink and purple was a great idea. I have a feeling it won't catch on, though.

Treatment: Spinal fusion surgery

Turns
out I never needed that back brace. I think I’d only worn it at home for a day
before attending my appointment at the Orthopaedics Centre and having my X-Ray
examined by the specialist.

“It’s
too late. That’s not going to do anything for you,” he told me. He measured my lower
curve at 43 degrees, and said it was too
severe and too late in my growth for the brace to have any effect.

When
I was first told that I qualified for spine surgery, I wasn’t scared – I was
actually happy. I thought that sounded great – an answer to all of my problems! (Needless to say, I was a *little bit*naïve.) I thought the surgery would give me a
normal body, get rid of my back pain, make me stronger, and lessen my
limitations. I remember thinking “wow, I’ll actually be strong enough to pick
up my future child without my back hurting”. But it turns out, none of those are
guarantees.

As
my surgeon explained, the main aim of
this surgery isn’t to put an end to my current problems – it’s to stop them
from getting worse.

Once someone’s spinal
curvature reaches a certain size, it’s likely to keep getting bigger throughout the
rest of their life – particularly as they get
older and their bones get weaker. Spinal fusion surgery aims to stop that.

How does the surgery work?

It
involves straightening out the spine as
much as possible before fusing the
bones together to try and prevent the spine from re-curving.

To hold the bones in place
while they fuse together (which actually takes a year or more!), two metal rods
are placed on either side of the spine and attached using metal screws.
These rods and screws should remain in your body for the rest of your life.

My fusion is only going to be done on the curve in my lower back, due to my upper curve not being as severe. (I think it's currently just over 20 degrees in size.) Surgeons generally aim to
operate on as little of their patient’s spine as possible, because,
unfortunately, spinal fusion surgery limits motion. (There are other
surgical options available to treat scoliosis, but none on the NHS/in the UK.)

Operation day

As
my consultant could see from my X-Rays that I’d almost finished growing at 15,
he said that I could wait until I was 18 (and had definitely finished growing)
before getting the surgery. (Like I said, scoliosis is likely to get worse as you grow. The fact
that I didn’t have much growing left to do meant that my scoliosis was unlikely
to get much worse in that time-frame.) When I finally did turn 18, it was a bit of a faff finally getting to that point – more X-Rays, an appointment to discuss the surgery, an MRI scan, a lot of waiting around... I was in university by the time I was told it would go ahead. My consultant said he’d make sure my operation was in the summer, so that the majority of my recovery time could happen over the holidays (and I would miss less uni as a result). This never happened though, and the operation date ended up being in the middle of my second year of university. I really didn’t want to take time off, so I promptly said “thanks but no thanks”, and asked to be taken off the waiting list until I’d graduated.

So now... here I am. On the 31st October 2017, I’m going to wake up with a new body – and that’s the body I’m going to have for the rest of my life. I’ll have to learn to stand up and sit and walk again. I’ll never be able to bend or twist or move in the same way.

I’m not going to lie – it’s pretty daunting. For the rest of my life, I’ll have two metal rods holding a part of my spine stiff. I’ll have to be careful with how I move, and with what I lift. My flexibility will be reduced. (Because of where my curve is, I actually have to be fused in the part of my spine with the most flexibility, which is a massive bummer.)

It’s not that it’s all doom and gloom, though. For some people, this surgery is the best thing that has ever happened to them. I’ve heard of people who go on to absolutely thrive. Some say that they’re stronger, less limited, and in less pain; some say that they’re weaker, more limited, and in more pain. You never know. And I’ll admit, it’s scary not knowing. But this is (probably... hopefully) the best option for me in the long-run.

***

I’ll
definitely post an entire blog about the surgery at some point, and I expect
that I might just generally be blogging more after the op – not necessarily
about my scoliosis, but just as a way to kill time! (The recovery time is pretty long, so I’m probably going to end up hella bored!)

If
you’ve actually read through to the end of this post, thank you! This is by far
the longest blog I’ve ever posted. (Perhaps the next time I post, I’ll be partly
made of metal!) Oh, and if you have any questions – no matter how personal – please don’t hesitate to message me!

1 comments:

Good morning, darling! I stumbled across you via a Scoliosis Facebook page. I couldn’t help but feel connected with you when I saw your operation date, it’s the same as my daughter’s birthday, and her name is Grace! I was diagnosed with Scoliosis a couple of days back at a physio app, and now I’m waiting on an X-Ray. I don’t think I’m too bad, but I hurt, so I guess we’ll see! Sending love, and wishing you a speedy recovery.